Idiopathic Neutropenia

I know there is another discussion on here with regards to this, but I douldnt post a message on it, so I am guessing it has been archived.

My mum has this illness, but not cancer, and I realise there is little support out there, especially in the UK for people who suffer with any kind of neutropenia (unless you are a child). I have so many questions as does she. This whole thing has been one nightmare after another, its taken a year for diagnosis, being sent from one person to another and now working between two hospitals who dont communicate!

Trying to get support for her I set up a facebook page and various other things and have been trawling the internet for answers... which are few and far between. needless to say its a worrying time and something that is hanging over our family.

I put this thread in the lukaemia section as it (apparently) has been nicknamed "pre-lukaemia by doctors.

I really hope to find others who are relatives or sufferers of this illness here. Just so I and mum have someone to talk to.

RE: Idiopathic Neutropenia

I'm sorry to know that your mum is going through this. I can't tell if the conditions are the same as what I had been dealing with since '01 but I was diagnosed with Cyclic Neutropenia then. My simple theraphy was to take a Neulasta injection shot every 21 days to jack back up the neutrophils periodically. The magic (though not to mention some tough side-effects of the shot itself) lasted until Spring '12 when my BM wouldn't react to the shot anymore. Thta's when they diagnosed me with T-Cell LGL leukemia. Now I look back and wonder why my oncologist never told me about the potential development into this back then or anytime b/w?? But that's a moot point now.

Let me know if I can help answer anything else related to this as I'm now battling a different war.